Palliative Care Rough · • 92% would be likely to consider palliative care for a loved one if...
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ComprehensiveManagementofInfantswithSeriousCongenitalAnomalies
JonMullin,MDSamJulian,MD
Disclosures
• Therearenorelevantfinancialrelationshipstodisclose
LearningObjectives
• Developanapproachtounderstandinggoalsofcareforexpectantfamilies
• Formulatecomprehensiveplansforchildrenwithserious,life‐limiting,orlife‐threateningcongenitalanomalies
Case‐ SD
• 31yo G3P1011at344/7weeksEGA• LimitedPNC• Femalefetus• Presentsforpretermlaborevaluation• Anatomyscanshowsventriculomegaly
Case‐ SD
• MFMconsultsNeonatology• Infantdeliversbeforeconsultationdone• Neonatologyinattendance• Babyreceives
– PPVx1minute,thenCPAP– Infantwithdecreasedtonebuthasmovementsx4extremities
• AdmittedtoNICUforfurtherevaluation
Case‐ SD
• HEENTexamconcerningforholoprosencephaly– Premaxillary agenesis
• Headultrasounddemonstratesalobar holoprosencephaly• MRIconfirmsdiagnosis
• Neonatologistdoes“notsoantenatal”consultation• Patientasksaboutpalliativecareconsultation
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• Howknowledgeable,ifatall,areyouaboutpalliativecare?
www.capc.org ‐ 2011
WhatisPalliativeCare?
• Palliativecareisspecializedmedicalcarefor peoplelivingwithseriousillness.
• It focusesonproviding relieffromthesymptomsandstressofaseriousillness.
• Thegoalistoimprovequalityoflifeforboththepatientandthefamily.
• Itisappropriateatanyageandatanystageinaseriousillnessandcanbeprovidedalongwithcurativetreatment.
www.capc.org ‐ 2011
Onceinformed…
• 95%agreethatitisimportantthatpatientswithseriousillnessandtheirfamiliesbeeducatedaboutpalliativecare
• 92%wouldbelikelytoconsiderpalliativecareforalovedoneiftheyhadaseriousillness
• 92%believeitisimportantthatpalliativecareservicesbemadeavailableatallhospitalsforpatientswithseriousillnessandtheirfamilies.
www.capc.org ‐ 2011
Hospice
• Partofpalliativecarecenteredonendoflife
• Careathomeorinhospicefacilities– Painandsymptommanagement– Ongoingpsychosocialanddecision‐makingsupport– Griefandbereavementsupport
Palliative CareHospice
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Feudtner Pediatrics 2011
PediatricPalliativeCare
• Chronic,life‐limitingorlife‐threateningconditions– 0.5‐2millionchildrenintheUS
• Higherdeathratethanhealthychildren• Previouslyfatalillnesses/conditionsnowchronic
• Patientsreceivingpediatricpalliativecarearefollowedlongitudinally
• Pushforearlierreferralstopediatricpalliativecare
IOM Report 2014 IOM Report 2014
IOM Report 2014
Whatdoespediatricpalliativecaredo?
Symptommgmt(58%)• Cognitiveimpairment(47%)
• Pain(31%)• Seizures(25%)• Dyspnea(22%)
Other tasks (42%)
• Communication (48%)
• Decision Making (42%)
• Care Coordination (35%)
• Transition to home (14%)
• Limiting Interventions (12%)
• Bereavement (11%)
• Recommendations at end‐of‐life (9%)
Feudtner Pediatrics 2011
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IOM Report 2014
• Becausethisiswhatismostoftenthematchbetweenavailabletreatmentsandgoalsofcare
• Doesthispatientqualifyforapalliativecareconsult?
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DiagnosesforNeonatalReferral
• FourDomainsNeonatalPalliativeCareConsults– Genetic/Chromosomal– Organ‐systemproblems– Infectionandimmunedisorders– Complicationsofprematurity
Carter,Children,2018
Genetic/Chromosomal
• Chromosomalaneuploidies– Trisomy13,18
• Severeformsofskeletaldysplasia– Osteogenesisimperfecta(II)– Thanatophoricdwarfism
Catlin&Carter,JPerinatol,2002;Carter,Children,2018
Organ‐System
• CNS– severeneuraltubedefects
• anencephaly;holoprosencephaly• meningomyelocele;encephalocele• hydranencephaly;severehydrocephalus• exencephaly
– Neuro‐migrationaldisorders• schizencephaly• lissencephaly• polymicrogyria Catlin&Carter,JPerinatol,2002;Carter,Children,2018
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Organ‐System
• Congenitalheartdisease– PentalogyofCantrell(ectopia cordis)– Single‐ventricle(HLHS)– AnticipatedECMO– High‐outputcardiacfailure– Hydropsfetalis
Organ‐System
• Renal– Potter’ssyndrome/renalagenesis– Poly/multicystic dysplastic– Urinaryascites– Obstructiveuropathy
Organ‐System
• GI– Short‐gutsyndrome– TPNdependence– Liverfailure– Biliaryatresia
Catlin&Carter,JPerinatol,2002;Carter,Children,2018
Organ‐System
• Structuralanomalies– Giantomphalocele– Congenitaldiaphragmatichernia– Pulmonaryhypoplasia
• Space‐occupyingthoracicmass• BPS/CPAM
– Inoperableconjoinedtwins
Catlin&Carter,JPerinatol,2002;Carter,Children,2018
InfectionandImmuneDisorders
• SCID• SevereperinatalHSVdisease• ToxoplasmosisorCMVinfections• Zika virus
ComplicationsofPrematurity
• SevereIVH• Ventilator‐dependentBPD• SevereNEC
Carter,Children,2018
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WhyinvolvePalliativeCare?
• Gettoheartofparentalfearsandwishes• Providesstrongpatientandparentadvocate• LongitudinalcareinsideandoutsideNICU• Assistancewithhomepreparation• Assistancewithmedicationsatendoflife
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Second Trimester
Birth
Obstetrics Maternal Fetal Medicine
Pediatric Subspecialty Care
Neonatology
Surgical Intervention
Complex Care
WhenshouldIinvolvePalliativeCare?
Case‐ SD
• HasA/Bs – escalatedtoNIPPV• Toleratesfeedings– escalatedtofullvolume
– NoPOinterest– Hassomerefluxaswell
• Initialtempinstability,resolvesover3weeks
Case‐ SD
• Goalsofcare– slowlyelucidatingbutnotfinal• Parentswanttotakeherhome
• Preparationsforgastrostomymade• Concernsaboutrespiratorystatusremain
PrimaryvsSpecialtyPalliativeCare
• Primary– Symptommanagement– PsychosocialSupport– BasicDiscussions
• Prognosis• Goals• AdvanceCarePlanning
• Specialty– Refractorysymptoms– Complexpsychosocialsituations– ChallengingDiscussions
• Uncertainorcomplicatedprognosis• Conflictsbetweenfamilyand/orclinicians
Quill NEJM 2013
PrimaryvsSpecialtyPalliativeCare
• Primary– Symptommanagement– PsychosocialSupport– BasicDiscussions
• Prognosis• Goals• AdvanceCarePlanning
• Specialty– Refractorysymptoms– Complexpsychosocialsituations– ChallengingDiscussions
• Uncertainorcomplicatedprognosis• Conflictsbetweenfamilyand/orclinicians
Quill NEJM 2013
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GoalsofCareDiscussions
1. Tellusaboutyourchild,whatiss/helikeasaperson?2. Whatisyourunderstandingofyourchild’sillness?3. Inlightofyourunderstanding,what’smostimportant?4. Whatareyourhopingfor?Whatareyourworries?5. Howdoyoumaintainyourstrength?
Tellmeaboutyourself/yourchild
• Setstone/firstimpression• Disarming• Differentthanstandardopeningofmedicalencounter
– Oftenrequiresre‐stating
• Followups:– Whatdoesagooddaylooklike?– Tellmeaboutherpersonality
Whatisyourunderstandingof…?
• Oftenthisquestionillustratesneedfordiscussionofprognosis
• Bestcase,worstcase,mostlikely– Setbumpersinlightofuncertainty– Increasesyourcredibilityasoutcomeunfolds– Setsyouuptotalkabout“worsecase”scenarios
HopesandWorries
• Respondingto“unrealistic”hopes?– Idotoo– I’msorry– Iwish…
• EmotionalDistancing
Hope
• Patientsremainhopefulaboutthefutureeveniftheyhavebeentoldthatthereisnopossibilityofcure
• Understandingofpoorprognosisallowspatientsandtheirfamiliestoformulatealternativehopesbyfocusingonoutcomesthatarepossible
• Patientsandtheirfamiliescanmultiplesimultaneoushopes:– Longlife– Meaningfullife– Minimalsuffering– Lovewithinafamily Wright et al. JAMA. 2009
Apatira et al. 2008Feudtner et al. NEJM. 2009
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HopefortheBestPreparefortheWorst
• Giveequaltimetobothhopingandpreparing
• Alignwithhopes
• Encouragedualagenda– donotimpose
• “Woulditbehelpfultotalkaboutifthingsdon’tgoaswehoped?”
Strength
• Opportunitytoassesspsychosocialdynamic• Imbeddedsocialandfamilyhistory• Spiritualassessment
• It’softenthesediscussionsthatunmaskkeydriverstodecision‐makingandopportunitiesforholisticsupport
HelpfulPhrases
• “Lovingparents…”• “Somefamilies…”• “Iwonder…”• “Iwish…”• “Iworry…”• “Woulditbehelpfulif…?”• “Yes,and…”
SharedDecisionMaking
• Pinnacleoffamily‐centeredcare
• Usefulinchildrenwithchronicconditionsorseriousillness
• Collaborativecommunicationandexchange– Familysharesgoalsandvalues– Medicalteamsharesinformationandexperience– Leadstorecommendation,and/orjointdecision
Katz, 2013
GuidedByGoalsofCare
Goals of Care
ApproachLive as long as
possibleLive as long as possible and as well as possible
Live as comfortably as
possible
DifferentialDiagnosis √ √ √
Assessment Intensive Targeted Limited‐target
Treatment Intensive TargetedFlexible and at times empiric
Follow‐up Intensive Intensive Intensive
TreatmentPathways
• Gastrostomyplacement• Tracheostomyplacement• Decisiontoaggressivelytreatseizures
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Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Most Everything Else!
Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Most Everything Else!
Dependent on Goals of Care
Case‐ SD
• Gastrostomyplaced,shetoleratesextubation• Stillhasspellsrequiringvigorousstimulationtorecover
• Limitedcodedecisionmade• Respiratorystatusremainsunclear
ParentsExpectationsofCaring:• Maintainingbelief
• Knowing
• Beingwith
• Empowering
• Doingfor
Swanson, Nursing Research, 1991Kavanaugh. Palliative and Supportive Care,2015
WUSMFetalCareCenter
N=244;2017Data
Discharge home/transfer55%
Terminate pregancy
7%
FDIU9%
Post natal death12%
Lost to follow‐up17%
Outcome Normal6%
CNS11%
Chromosomal/Syndromic
13%
GI13%
GU10%
Multiple gestation16%
Thoracic5%
Other14%
Not entered12%
Diagnoses
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Cardiac26%
Genetic26%
Neuro13%
Resp19%
Skeletal10% Renal
6%
2018PPCConsults
N=30;2018Data
2017
2018
0
2
4
6
8
10
FDIU Death<24 hours
Death24 hours‐2 wks
2 wks‐6 mo Living
2017 2018
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PerinatalPalliativeCareOutcomes
“Blueprint”forAntenatalPalliativeCareConsultation
Consultation
• Coreconceptsofpalliativecareconsultationholdtrue
• AssessUnderstanding– Prognosis– Comfort‐basedandintervention‐basedplansofcare
• Discussionofinformationanddecision‐makingpreferences
UniqueAspects
• Addressconcernsaboutsiblings,otherfamilymembers
• Shatteredexpectations,isolation,differingparentalattachment
• Discussionofinternetandsupportgroupuse
• Discussionoftermination?
Kett, Acta Paediatrica, 2017
Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Most Everything Else!
Dependent on Goals of Care
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Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Most Everything Else!
Dependent on Goals of Care
PartneringatEnd‐of‐Life
• Delivery– Typeofdeliverymayinfluenceexperience
• Locationofcare– DeliveryRoom– PostpartumvsAntepartum– Homewithhospice?
• Planforsymptommanagement
Denney‐Koelsch, J Pall Med, 2015
PartneringatEnd‐of‐Life
• Lactationcareand/ormilkdonation• MemoryMaking
– HandandFootprints– Photographs– Religiousorspiritualconsiderations– Siblinginvolvement
• Discussionofautopsy/genetics
Denney‐Koelsch,JPallMed,2015
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Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Most Everything Else!
Dependent on Goals of Care
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Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Most Everything Else!
Dependent on Goals of Care
Lookingahead…
• Discussionof“futureconsiderations”– “Isthereanythingthatwouldbeworsethandeath?”
• Plantseedsfordiscussionsoflimitinginterventions– “Theremaybechallengingdecisionsahead,like…”
• Anticipatoryguidanceaboutchildrenwithseriousillness
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Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Most Everything Else!
Dependent on Goals of Care
Pediatric Palliative Care
PerinatalEnd‐of‐Life
Care
Prognostic Uncertainty(prepare for both
scenarios)
‐Anencephaly‐Exencephaly‐Renal agenesis
‐HLHS?‐Holoprosencephaly‐Mild CDH‐Omphalocele
Most Everything Else!
Dependent on Goals of Care
PrognosticUncertainty
• Explicitnaminganddiscussionofuncertainty• Avoidoverlyhypotheticaldiscussions• Navigateexternalpressures
• Discussionandguidancealongthespectrumofoutcomes
Conclusions
• AntenatalPCConsultationprovidesopportunitiesfor:– CollaborationwithcolleaguesinMFM,Neo,nursing,etc.– AdaptPCtoearlierdiagnosisofpediatricseriousillness– Exquisitesupportaroundend‐of‐lifecareperinatally– Earliestinvolvementofpediatricpalliativecare
Conclusions
• NeonatalPCConsultationprovidesopportunitiesfor:– CollaborationwithcolleaguesinNeonatology,pediatricsubspecialists,nursing,etc.
– Doesnotlimitmedicalmanagement– Allowsunificationofparentalandmedicalgoals